I created the sound of madness
wrote the book on pain
somehow I’m still here to explain
Sound of Madness
I’m starting in the middle of the story tonight. It’s not a literary device I’m choosing to employ, it’s just the easiest way for me to get started, and tonight getting started is what it’s all about because writing is often my salvation. Tonight I’m all about salvation.
When the shaman and I locked horns, to the point of my being put on leave, it was over my behavior, behavior I see as rooted in the fact of being bipolar. He argued choice. I argued chemistry. I've been under-medicated for several months due, he believes, to poor choices; I argue that the poor choices were due to my being unaware I was under medicated. Whatever. My brain chemistry is off kilter, has been off kilter. What this looks like to others is me overindulging in vices, withdrawing from family and friends, and struggling to cope in general. What this looks like to the shaman is me not following orders. In other words: I have a bad attitude and am unwilling to change, or even be motivated toward change.
A bad egg fated to rot rather than hatch. Willfully rot.
To be bipolar is tantamount to being a slacker on welfare, and by that I mean that those around us are driven to distraction with what looks like a willful refusal to straighten up and fly right. Again with the chicken/egg metaphor, I know, but the fact is that with bipolar disorders it’s never clear. Is the situation causing your mood or is it your mood that is causing you to reinterpret the situation? It can be nearly impossible to tell. So here I am, someone who matriculated magna cum laude from her graduate program, a scholar who walked away with the plum graduate prize, and for awhile, a successful editor and writing coach, but now I know exactly how the juvenile delinquent feels; there’s no winning for losing. Like I said, a bad egg.
In retrospect, which has the staggering clarity of the larger perspective, I believe I was misdiagnosed when a major depressive episode laid me out after grad school. Oh, I had a major clinical depression all right, that much is inarguable, but from today’s perspective I’d have to say that my all-consuming, at-one-with-the-wallpaper-and-the-furniture experience was the hallmark of a bipolar depression, a very ugly and until recently a very misunderstood state of mind and body.
My state of complete incapacity, accompanied with my fierce focus on making sure I got the right treatment if it killed me -- for surely not getting the proper treatment would kill me, and by my own hand at that -- this is what led to my being misdiagnosed as having Borderline Personality Disorder. I know that schizophrenia can easily be considered a much heavier cross to bear, but I must disagree. I have a cousin who carries that cross. We all know that meds are everything for him. And we all know that what he does when improperly medicated is about brain chemistry, not attitude. But forget all that because I didn’t grow up in that, the sane, part of the family. A person with a borderline personality is one considered, by diagnosis, to be a person with no regard for anyone’s welfare but her own. Worse. Traditionally it has been considered by the mental health community to be an untreatable condition.
Borderline personality disorder (BPD) is a life sentence. And it is your fault, all of it, bad egg that you are.
At the time of my diagnosis, there was one treatment for BPD, experimental, and it was practiced in Portland, Oregon, my home town. My family and friends went to the clinic’s intro-to-your fucked-up-loved-one and came back saying, That’s you! They were genuinely relieved. I knew in the deepest part of myself that this was not, in fact, the name of my trouble, but I wanted to get well so I sucked it up and accepted the unacceptable.
Here’s the best part. The treatment for BPD is a behavioral program completely free of the coddling of emotions. It focuses on the patient learning to control her emotional state so that she might also control the actions that are the outgrowth of those emotions run amok. Conversely, the hallmark of a bipolar disorder is behavior that is not only uncontrolled but uncontrollable. Let me put it another way. Once I received the proper diagnosis and treatment, my new catch phrase became “Better living through chemistry.” It was that obvious.
Upon being properly medicated for cyclothymia, which I like to call Bipolar Lite, I saw behaviors that I had struggled with lifelong all but disappear overnight. Overnight. I took a pill and suddenly I could deal with the previously undealable. The mood swings slowed down to a little tick tock at the center and the chaos abated. I quit having what psychiatrists “suicidal ideation”; I knew the feelings weren’t real, but they felt real. Imagine that going away with a pill. Now imagine this: the actions of my harpy of a drunken mother suddenly made perfect sense to me. Now that is what I call clarity.
The worst part about being bipolar, in my experience, is BEING BIPOLAR. The life bipolar is a fucked up existence that requires constant re-evaluation and adjustments to maintain a delicate balance, and even then, balance is lost over and over and over. I’m all about meds. I take my meds like daily communion. But this year, just this month as a matter of fact, I learned that I can be properly medicated and still have an episode. How fucked up is that? Well, okay, I used to be on seizure meds and still got seizures, so... never mind. I get it. It’s just that clinical depression, even the black-hole-sun, death-star variety (with which I am intimately acquainted) is easier to medicate; when the meds work, they work. Bipolar Spectrum Disorder, which is the brand new shiny term for what used to be called manic depression, is a cycling disorder; just when you think you have a handle on your symptoms, the situation changes. And so do your symptoms. Without notice. Suddenly, what used to be fine is not fine. It’s a lot like being the crazy person you were before getting the proper treatment. I’m still getting the hang of it.
Enter the shaman.
You remember the shaman, right? That’s where this rant started. I came to the shaman by way of my osteopath. For over a decade, my osteopath and I have been working on undoing the tangle of a lifetime’s worth of chronic pain. From her perspective, I had finally come to a point of wellness, but something, “some energetic glitch” as she called it, was telling my body I was not well. She’s learning healing techniques from the shaman and so she asked if I would be willing to see him. Fast forward eight months. The shaman is angry with me because.... oh, let’s just skip the details. At this point it’s a he said, she said. So why do I care so much that the shaman is angry with me?
Before I answer that question, let me say this. Mistakes get made. Incorrect diagnoses will be given and incorrect treatments will be prescribed. It is inevitable. Neuroscience is still a young field, especially in the science of so-called mental illness. (I argue that “mental” illness is just as physical as diabetes or heart disease; it’s all chemistry. But that’s just me.) What is known about migraines, memory, and mental illness today is huge as compared to what was known ten or twenty years ago. I have spent my entire adult life gamely slogging through mistakes and missteps with my doctors, and I have respect for the fact that we are all learning our way through this brain chemistry stuff together, but... Forgive me. I’m unable to write this next part without rancor, so I’m going to let a couple of Ph.D.'s say it for me:
The most heartbreaking mistakes come when patients get blamed for failing to get better.*
I have been that patient. Only in my experience, the moment I start to be blamed for not getting better is actually directly after the moment our doctor/patient relationship has reached its zenith and it is time for me to find a doctor with greater skill. So far, my assessment of this shift has been accurate, and I have been well served following my judgment. My assessment: the shaman is angry because I am failing to get better on his terms. It’s the same brand of anger I heard from my first behavioral therapist, the one practicing the “cure” for my mistaken borderline personality diagnosis. Both of them have yelled at me these very words: “I’m not here to do it your way.”
I get it. I have not done everything the shaman told me to do. In addition, I have refused to let go of some of my less-than-stellar habits. But this, I argue, is not because I am willful. It is because I can take only so much stress and only so much change before I unravel. I know this; it did not require a diagnosis for me to know this about myself. I used to think this was a failure of character -- it certainly looks like it -- but what I’m coming to understand as I learn better living through chemistry is this: I am bipolar. Bipolar symptoms are stress-related. When my brain chemistry is balanced, I am balanced, but add stress and things shift. I have, just like my undiagnosed but undoubtedly bipolar mother, habits and coping mechanism that I developed long before my diagnosis. Bad habits. Bad coping mechanisms. However, unlike my mother, I did not settle into self-medicating with alcohol, sex, and pills. I began the search for wellness at sixteen. By virtue of a few key decisions, an education, and some decent breaks, I have avoided my mother’s hell, mostly -- a huge accomplishment -- and more importantly, I have avoided imposing my hell on children. Some days that is enough. Other days, that is everything.
So, do I want to live a life that’s better than that simple summation?
Is a pig’s ass pork?
You didn’t see that coming, did you? But here it is, the question that everything comes down to: chicken or pig? In a meal of ham and eggs the chicken is involved, but the pig is committed. This is how committed I am to getting well. At ten I knew something was very wrong. At fourteen I knew I was in the kind of trouble I couldn’t get out of by myself. At sixteen I paid for a psychiatrist with my own money. I paid my way through college and grad school and when I was done, I got myself to the kind of doctors that could help me with my botched biology and neurology. I am nothing if not committed.
Here’s my problem. In his zeal to get me to snap out of my complacency, the shaman missed my bipolar spin out. He is also a master level therapist, so you’d think the shaman would have noticed, but my psychiatrist didn’t notice either. How could he? I didn’t know to report the symptoms I was having. Why? Well, the shaman assigned my experiences to “energetic shifts” -- as did I -- and I was experiencing a shit load of shifts. But there was more, and until now I didn’t know some of these things could be symptoms of my bipolar condition. I now have new list of additional signals that, like the idiot lights in my car, I ignore at my peril. I mean, Fuck me! I haven’t been this wrong on this many fronts since I was a teenager.
When I was a teenager I lived with my aunt, my mother’s sister. I knew that living with my parents would be the death of me (again, by my own hand) and so I moved to where someone would be watching, someone to reel me in when I got too far up a certain creek without a paddle. My aunt was a great disciplinarian. Firm. Fair. Fun. She was perfect for my much needed teenage rebellion; I could count on her the way a trapeze artist can count on the net. That is, until my uncle moved back in and took over the discipline. At a critical juncture in my young life, he missed the opportunity to see into my heart and instead focused on one night’s out of control behavior. His response was to give me what I call “the sweat off my balls” speech. I don’t remember a single word of it, just the start of that sentence: “And I wouldn’t give the sweat off my balls...” My uncle gave me much worse than the sweat off his balls. He gave me enough rope to hang myself when I didn’t need any more rope. What I needed was the net.
Like the shaman, my uncle was sending a message. I got the message, though it wasn’t the one he thought he was sending, and it scared me, which is what he wanted, but it didn’t scare me straight; it scared me deaf. And so did the shaman’s anger. Now the shaman will tell you that he is fighting for me and he’s waiting for me to fight for myself. He doesn’t know that I am already fighting for myself. This fight in me, this fight for the person I know I am and against the person I am (again!) being wrongly seen as being, this got me suspended, put on leave. It got me the shaman singing the lead in this damn song:
Yeah, I get it, you’re an outcast, always under attack, always coming in last, bringing up the past. No one owes you anything. I think you need a shotgun blast, a kick in the ass....
All my life, I have fought the effects of botched brain chemistry, the side-effects of medication, and the roadblocks of bad habits. And chronic pain, just for good measure. I object to brain chemistry being called mental illness, but there it is. And I sure as hell object to brain chemistry being called a bad habit. More than anything else, however, I object to the idea that when I argue for a clear vision of the human being that I am -- so that I might surrender to change -- I must be accused of arguing for my limitations.
That line of stars? That’s a stand-in for the look on my face and sound of my voice, both wordless with frustration. I have come so far. I have unravelled and repaired so much. I want to tackle and take down this last “little glitch,” I do. I do not want to be bound by my limitations. They are there, yes, both my neurology and my biology are anything but standard, but it is workable. Here’s the thing. For the last several days, as I have returned to write and rewrite, think and rethink and rethink, whether I played Shinedown’s song or not, this is the only line I’ve heard:
When you gonna wake up and F I G H T ...
When you gonna wake up and F I G H T ...
When you gonna wake up and F I G H T ...
I’m just not sure which direction to throw the punch.
* Break the Bipolar Cycle: A Day-by-Day Guide to Living with Bipolar Disorder, by Elizabeth Brondolo, Ph.D., and Xavier Amador, Ph.D. (p 36)
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